My Bouquet of life with kids, making, baking, sewing, crochet and all things vintage ofcourse

Friday, 16 May 2014

M.E Awareness Week - It's all about ME

Hello lovely people, you have NO idea how much I have missed you guys. Hopefully all being well I am back and promise to catch up with my news and all your news over the next couple of weeks (yes I know I have already said this, but life threw the odd curve ball at me and that's life!).

This week is M.E awareness week, and this wouldn't be Cosmos and Cotton without acknowledging that. Many of my regular readers will know that I have been struggling with this debilitating illness for nearly five years now, wow, five years, I still can't quite believe that I have lost so much time in my life due to an illness, pretty scary. I am going to add right here that this year my post about ME is not going to be all doom and gloom as this girl here is on the road to recovery, yes, you heard me say it and you read right. There is NO stopping me now, I am determined to kick this M.E's butt and boy that is exactly what I am doing, and I hear so many of you say, but HOW?!!

Well, the honest truth, first and foremost through acceptance, you see I haven't really lost so much of my life over the last five years, if anything I most probably gained something that I never would had, had I not fallen ill, and that is compassion and love for myself and my body. You know this illness is tough, there is NO denying it, it throws you through hell and back several times in a day and spits you out when its done with such little regard. It is filled with many sad moments, loneliness, pain, brain fog, or in my case (and many others), just the inability to use your brain full stop, in fact it's more like NO BRAIN. There is constant pain, sleepless nights, nausea, vomiting, diarrhoea, dizziness, stomach pain, inability to eat or digest food, let alone absorb any nutrients from it. There are pins and needles, burning all over your body like someone is scalding you with hot water, ear ache, sore throat, muscle pain like you've run a marathon, oh you name it the whole tutti, or as you lot would say the full Monty.

It is tough, yes BLOODY impossibly at the best of times and why, well you know the funny thing is NO ONE KNOWS!!! Neither does anyone really care as there is no magic drug, which means no additional profit margins for governments or pharmaceuticals, sad, but hey oh so true. It is this invisible illness that hides within each and every one of the apparent 250, 000 people who suffer from this condition in the UK alone, yes in the UK alone, let alone the rest of the world, yet there is no support and no insight into this.

This is most probably the single most complex illness that exists, and the reason why is because even though each and everyone of us exhibit the majority if not all the symptoms and more, we all have a completely different experience of them as they manifest and affect each and every one of us differently. Well to be honest this is not surprising seeing that each and every one of us have a completely different DNA profile, so not at all that strange right. The issue is there is NO CURE, NO MAGIC DRUG, NO FIX.

Now there are many so called treatments claiming they can cure ME, Chronic fatigue and Fibromyalgia and for many people these treatments really work. The question is why do they NOT work for EVERYONE. Well I have an opinion about this, but I will save it for just another minute or so, bare with me. Treatments are geared up to focus on your emotions with specific emphasis on events in your past (I am not ruling out that past events can have a significant impact on our well being), some would argue that it is a build up of toxins in our bodies that affect our lymphatic system and eventually cause havoc with our parasympathetic nervous system (I am pretty much supporting this camp!), others argue that it is all about our thought processes and what we do with these thoughts (CBT), some say that symptoms are emotions-in-motion (you get that e-motion and I am also supporting this camp!), others argue graded exercise is the ticket (hell YEAH, certainly not in my case, it threw me for six!). Then there are a host of alternative medicines, Ayurvedic treatments, homoeopathic treatments, herbs, Chinese medicine, acupuncture, Reiki, you name it. I could be here all day typing this up. Now some of these can really help and alleviate the pain, discomfort, reassure, sooth the mind or body, but they don't really focus on the root cause of it (maybe the emotions in motion does). So even though I am sitting firmly with both feet in the 'build-up of toxins overloading the lymphatic system camp', how did they get overloaded in the first place??? Well for me the answer is simple, by ignoring all the signs that my body was giving me when it was shouting, stop doing this activity I really don't like it (headache), stop doing this for too long (back ache), stop eating that (dicky tummy or gas), etc. The same pretty much goes for the treatments that work for some and not for others, the answer in my opinion why it doesn't work for everyone is simply the same reason why some people function optimally eating vegan foods and others being the complete opposite and living life to the fullest on a paleo diet. We are all different and ONLY YOU can really understand what your body needs, no one else can do it for you. They can guide you and support you, but only YOU can unlock the keys to optimum health. All these programmes do (mostly) is give you the tools, you still need to do the work. As for the lymphatic drainage, well that's a physical treatment, so it is helping with unblocking the lymphatic system and believe you me IT REALLY WORKS to alleviate symptoms, I am still doing it four years down the line, so that says a great deal about the Perrin Technique but it is not the only treatment that is going to get your better. You need to find the root causes (and yes there will be more than one, trust me, we are complex creatures!).

I am someone who is very 'hungry' for information and also for life itself (we only get one chance right!), so when something like Fibromyalgia (as in my case) happens, you don't take it lying down, pardon the expression as ironically I was lying down for many years. What I did do though was to read a few minutes when I could, listened to audio books even just a few minutes at a time (its a weird thing how you brain just can't take things, it feels like the pressure build up from information is just so intense that your head is going to explode). I read a lot of crap and a great many wonderful and inspiring books over the years, some of which I will list at the bottom of this very long blog post (sorry!). One thing that kept coming through time and time again was that I had power and control, I just needed to learn the tools of how to use it. Now hang on, I can hear those with this illness screaming what I screamed out for so many years: 'but I have complete adrenal exhaustion', 'I have parasites', 'I have really high levels of ESR (inflammation in the body)', 'I have heart failure', I have low white blood cell count, etc. how can this possibly be something I can fix, it is all physiological right! The bottom line is I can't fix it for you, but you have the power within you to make changes to your life so you really focus on what your body and mind needs. This is such a complicated subject and most probably one that I can talk about for hours, but in a nutshell, this illness is a blessing in some way, it is an opportunity to REALLY STOP, YES STOP and LISTEN!!!! Don't think about the pain, the hardship, the sickness, the inability to sleep, no, think about how you can listen to these messages. These symptoms are NOTHING more than your bodies way of talking to you, it is giving you messages that you need to start listening to, that is why they are shouting out at you because you are NOT listening (present company included!!) and the thicker your skin (as in my case) the longer it is going to take. So when you are spending hours in bed cursing these aches and pains and sickness start loving your body and giving it the care and support that it is needing at this time, just like you would with your child. It needs lots of very special TLC, don't just ignore these requests. It also might very well be telling you that it wants something different than what you are doing right now, so try it and see if it works, if the symptoms dissipate or lesson.

Now if you were anything like me, prior to illness I honestly must have thought I was superwoman, a full time degree whilst working a full time job and two pregnancies, writing a dissertation whilst breastfeeding two or three times a night, gawd what was I thinking??? And when the going got tough I jumped on my mountain bike to blast a few hills just to relieve a little tension, or add some shall we say. One thing is for sure I NEVER listened. I heard all right, the signs were all there, but I chose not to listen, why because how the bloody hell was I suppose to know they meant something. In society we are conditioned to suppress these feelings of discomfort or pain, we are brought up to having to conform and just to go with it even when we don't like it, 'just eat those things on your plate', 'awh you will be OK, just carry on', 'don't be upset', 'don't be ridiculous that's not scary', 'you're OK that doesn't hurt' and on goes the list, you get where I am coming from. Well for me (and don't get me wrong I am not telling you what to do here, I am purely trying to put my perspective out there) it has taken me years to realise that these symptoms, pains around my body, diarrhoea, you name it was a sign that my body wasn't happy with it and now finally I am really homing in to address these issues. I am going to take the opportunity to add here that it is far from easy, it is going to take years of practice, but I will get there!!!

It's NOT easy, simply because we just aren't brought up to be mindful, we are not conditioned to look into ourselves, that would be seen as being selfish and self centred right, well in my opinion it is far from that. As a Mum of two, I know just how hard it is to look after two small and dependable children when you are not feeling well enough to even lift your arm, so yes I know just how important it is for me to be well so I can give my children and family the best possible care and attention. It is a bit like the life jackets on an aircraft and having to ensure that you have yours on before helping others. Now that I have a different perspective in life, I often giggle when I see people spending hours cleaning every little spot on their cars, polishing the wheel caps, their pride and joy, yet do we do this to our bodies, hell no! We would never spend hours each week or every other week just giving our bodies a little TLC and maintenance, we don't have time for things like that, but why???? These are our gorgeous and amazing bodies (vehicles) and without the correct fuel and love they don't function properly. You wouldn't put diesel in a petrol car would you, yet, we so often put so much crap in our bodies and wonder just why it is we feel so shitty. Hey, I am not preaching here as I am the first person to hold up my hands and say guilty as charged, no more though, I know now just how important nutrition, meditation, time to yourself is and I am never letting go of these golden keys, well never say never (a lesson I learnt becoming a Mum, it sure as hell has bitten me in the bum several times).

So yes, this is not a conventional post about ME today, but I just wanted to give people a little bit of hope. DON'T give up, never stop believing and never say never. No one can really tell you what your body needs, only you can decipher that and isn't it strange and equally amazing that we all are so very different and that a vegan diet can bring optimum health for one person whilst a paleo diet works for another, lets not judge! Experiment and try them all, the world is your oyster, and have a little fun with it, life is to short to be serious all the time.

Sorry for this super long post and for those of you who actually managed to get to here, WELL DONE and THANK YOU!! Don't get me wrong I am by no means cured, I still have a long way to go, but it is all baby steps and the confidence that these steps will get me there one day. I realise this is a super long post, but I wanted you to know that despite the fact that I still have heart problems, adrenal exhaustion (yes borderline Addison's disease), high levels of ESR (inflammation in the body), very low white blood cell count I am on route to hopefully turn some of these around. I have gone from not being able to walk at all to now being able to walk small distances, I am no longer lying down in the day (yay!!) and I am grabbing back a little of life where I feel I can. I will also stress here that the last couple of years (not so much the early ones) I was happy with life, I accepted my life and I was content with being mostly confined to my house, being at ease with your situation no matter what it is has got to be a good thing as it brings calm to our minds which in turn affect our sympathetic and parasympathetic nervous system. Constant negative emotions and thoughts breed illness and there is no doubt in my mind that a positive mind will bring a positive body over time. I am NOT saying that thinking yourself well is going to get you there, NO not at all. What I am saying is being positive, tune in, take time, listen, figure out what your body needs, how it operates and how to get it to function optimally, only you hold the key to solving this mystery.

So here are some of my all time fave books (in the order of preference)

You will note that I have added a parenting book, but it is a book I read alongside the Science of Parenting (which is another fascinating book) by Margot Sunderland, which really emphasises why as a society we are developing in the way that we are, not being able to express our emotions or at least when we express it that it is accepted and understood. It also explains why we develop this feeling of never feeling good enough and always striving to please. We can learn a great deal from ourselves and our problems by looking at the way that society raises children. Alfie Kohn's book really brings many issues to the forefront that mothers and father will be able to relate to so if you have ME and have children, you might find this read insightful.

So that's it for today's post and thank you for sticking with me. I would love to hear your comments and thoughts, so please don't be shy to share your views. I was actually hoping that by now my new blog, which would be more geared up for these kinda posts, would be up and running by now, but you know its not and hey I don't do pressure anymore, it will happen when it will happen, se la vie! For those of you new to my little space, a very big welcome, I suspect this post might blow your socks off, I promise a little crochet related chatting next time.

Wishing you all a very pleasant weekend, I am actually going to my first concert in years tonight as I just couldn't miss the opportunity to see the legendary Prince, and 'tonight I am going to party like its 1999' (haha).

22 comments:

What a thought provoking, interesting post. You will no doubt inspire many with your words, and I am really happy to hear you are moving towards a better place in your own journey, a day at a time. You've given me plenty to ponder on that's for sure. Enjoy every moment of your night with Prince!! x

I really enjoyed your post today, you are brave and an inspiration. I believe we as women suppress so much, we have so much on our plates all the time so we constantly putting ourselves last, we don't listen to our bodies until they totally give out. Whether that is the flu, ME, Cancer, adrenal fatigue...the list goes on. I commend you for taking control, and finding a way to work through this. Your words are going to help many, many people.Glad you are back,Meredith

Yes, I was very interested in your post. I too am reading and researching, finding my way through debilitating health issues.m. I have Adrenal insufficiency. I'm told my adrenals will never work again. Fibromyalgia, hypothyroidism and a few other complaints. I finally got did ability after a 3 year fight and when I thought I was getting a hold on everything, I got struck with this terrible daily burning, tingling pain that was keeping me home in pjs going crazy.For me a strong medication, gabapentin, is finally helping. I hate taking something but had to after trying everything else including yoga, exercise, meditation and massage. I'm slowly regaining some of my life back. I continue to look for healthy natural solutions though.I will check in once and a while to see how you're doing now that I've found your blog.

So lovely to see you here. And out of the corner fighting! Such an interesting post. I agree that we all need to be more mindful of our bodies. I am terrible at ignoring the signs, and shoving junk into my body at certain times. I am getting better at looking after myself, and living more mindfully. Starting my blog certainly help get that process rolling. Meeting fabulous and inspiring people like yourself, has helped me start to address and overcome my own stuff.Have a lovely weekend, lovely girl.Leanne xx

Let me start by saying that I hope you have a wonderful time partying at the concert and I say way to go for getting out and doing it! It sounds as though you have been through a long and no doubt very difficult journey with this illness, but I am so amazed at how you handle it, keep going and stay so determined. I am sure that your post can only give hope and light to your fellow sufferers. Keep going there, you are doing so well! xx

Wow that just flowed out didn't it. A girls got to say what a girls gotta say! I like your 'I don't do pressure anymore'. That's great and so glad you are able to listen and find your way through. Have a fantastic concert tonight! Heather X

I'm so glad your continuing to fight against this terrible illness. I really think you are doing all of the right things Hannapat. I needed to read this post today, I need some inspiration to start looking after myself better. In the evenings I've run out of willpower and then I snack on junk, when I shouldn't really be eating anything at all. You're reminded me that our bodies are precious and we should look after them, thank you. I do hope you enjoy the concert and that you have a good weekend. CJ xx

I am so so glad to hear you are turning a real corner with your health. I absolutely believe you can do it. I know my downfall in the beginning was ignoring the screams of my body, like I'd stuck my fingers in my ears & sung 'Lalalala' so I wouldn't hear it. I am an all or nothing kind of gal & I tend to push beyond my limits even now. I am inspired that this is working for you, although I have met many others who have tried the methods of nutrition & meditation & found no real benefits. I too have never found my diet made any difference, but maybe I haven't tried the precise things for me? I wish there was some universal answers, whereas things that help me have not helped others & vice versa. It really is such an individual thing, sometimes I wonder if there could be many versions of M.E, where some of us don't even have the same condition at all, it's just that the symptoms overlap. Like you I relish all the things I can now do, & took for granted when I was well. Even if I still live a life of limitation, it's better being at 40% then 5%. I wish I'd had the knowledge you have at the 5 year mark, which may have prevented my illness going on for 20 years. Much love & enjoy that concert! May it be the first of many. Xx

I have been on a similar M.E journey... detoxed for a year with enimas / herbs... battled but lost my fertility so surrendered to the now, listening to the subtle messages of my body and slowly working through the conditionings of my mind. I treat my body naturally... It has been challenging doing it alone... easier to hear and respond when there is little distraction but hard to physically do the day to day things that others take for granted. Ten years in I live a simple life... keeping drama and stress to a minimum... enjoying the beauty of nature, living mindfully and continuing to breath deeply and be me... I send you love Cass x

Dearest Hannapat I have missed you so much and am so glad to hear that you are back. I have worked with many lovely people in my past life with this condition and have seen first hand what a struggle it is and I have never lost sight of their courage and determination, something I always see in you. Thank you for a wonderful post Hannapat it brought tears to my eyes, I am sending you a massive virtual hug. All my love as always, Dorothyxxxxxxxxxxxxxxxxxxxx

Hannapat it sounds terrible what you and many other people are suffering, and having gone from what you were able to achieve once to what you are able to do now must be so difficult. I cannot imagine how hard, painful and frustrating it must be. You are one very brave woman, and so determined to crack this that you surely will.I hope you have a brilliant time tonight.Gill xx

Dear Hannapat. There is so much information in your post, I had to go away and digest it for a few days. I can only begin to imagine what you and other ME sufferers are going through and I really admire your determination to beat this condition by pursuing what works best for you. I am glad that you are on the road to recovery and wish you all the best! Christina xx

I so admire your courage and determination to cope with this horrible condition and to live the best life possible. You have lots of interesting information in this post which help to explain the effects of M.E. and how each person with it differs. You are doing well, dear Hannapat! I hope you had a lovely time at the concert!Helen xox

Well done you for getting a grip of you life again! So many people give up and accept that their illness won't get better, we might have different challenges but we are on the same journey....sending you love and strength :) xxx

Hannapat, a very passionate post from a passionate girl. I think you are amazing in the way you are tackling your health problems and also being an inspiration to other sufferers. I am sure if anyone is going to beat it, you will. Have a wonderful time at the concert tonight.Thank you for your lovely comments. So glad you like my curtains. They were my mums and had a cream background and I dyed them lavender, i love them too. Big hugs for you, love Linda x

Dear HannapatWhat a touching and insightful post, thank you for writing it, I have learnt so much. You are such and inspiration and I want to wish you every bit of luck with your recovery xI LOVE Prince ..... well his music that is!take carelove Jooles x x x

Hannapat,Wow what a post.I have missed your post so glad you are back. I admire your determination to cope with and live with this dreadful disease. Thank you for all this information I have a friend suffering and this post will be invaluable o her. Your post echoes as many of my feelings about living with a body that simply does it own thing .I agree totally that we don't listen to our bodies, it is such a shame if I had listened I too would have stopped rushing around like super woman. Just like you I have thought what was I thinking off doing all those things a degree , two child, retraining and moved house I was exhausted and ended up having a stroke. whilst I'm not sure I could have prevented a stroke If I had slowed down my blood pressure would not have been sky high.This is such a great post as it will make others think about taking more care of themselves. your blog has made me try new things I have started doing yoga, I do breathing and relaxation and I have made some of your yummy cakes. Thank you Hannapat, you are doing a great job.HugsHelda

I do agree with you, but I have something to add ... I think one of the problems with ME is that not only are there a number of routes through and out the other side there are also a number in. A whole bunch of us arrive via bacterial or viral infection, in my case the latter. These are serious illnesses some folk never really get better from - mine nearly killed me - and in these cases I suspect that different mechanisms are at work. But the end result is the same. ME seems to me to be a response to overload of any kind ... the body turning on itself in an attempt to be allowed to just stop. We live in a world where rather than take to our beds for a couple of days when a cold lays us low we pop the latest pill we saw advertised as a cure all on the television and soldier on. Few of us sleep enough. We hurtle along at a pace that doesn't allow our bodies time to repair the damage, at cellular level, of everyday living. I had been working sixty hour works and coming home to four kids just before becoming so ill. My body was probably vulnerable to infection, and certainly had no reserve to draw on when it needed it. So though I agree with every word you've written about self care - and lately that's something I need reminding about, life has been too full of caring for others and I've let things slip - I think we need change at societal and cultural level too if we are to halt the rot that will otherwise claim another 250,000 before long.

Hi there Hannapat (I love this name). I have just found you via Leanne's IG feed and I'm so glad I did. This post is brilliant and informative - thank you for taking the time to write it and also for being so open (how else will people understand the condition). Three years ago I was trying to be a similar superwoman in my work , home and yes even in my exercise regime. It all suddenly changed when after a lengthy cold I found myself hardly able to walk and experiencing other symptoms that you describe. I was lucky in recovering quite quickly physically but I am still left with some symptoms. I have to be mindful of not over doing things, have learnt to pace myself and have to be vigilant about changes in my health. I was not diagnosed with ME just with 'stress induced illness' and anxiety and depression. Anti-depressants didn't work for me although seeing a counsellor did as it gave me the courage to make big lifestyle changes and to decide that I was going to choose happiness above anything else. I agree strongly with your views on positivity, unreasonably high expectations from society and self-care. Thank you again - I don't usually write such long comments! Take care, go gently and I hope Prince was AMAZING! Claire xo

A very informative and inspiring post Hannapat. Wishing you well with each baby step on your road to recovery - so glad to hear you're feeling a little better. I have a friend who is a hypnotherapist and she was telling me about the powers of Quantum Healing and CBT...it was a very interesting conversation. Thanks for the reading list. Hope you had a great night out with Prince! Take care of you,Amanda xp.s. Are you still enjoying Breaking Bad?

Monthly Mand-a-long Grab Button

Etsy Shop

Weekly Bake

Liebster Award Nomination

Follow this blog with bloglovin

Follow by Email

Something about me

Welcome to Cosmos and Cotton, I am so pleased you have stopped by and I hope you enjoy your time here. For this blog I am using Hannapat, the name my Mother called me when I was growing up and it holds a very special place in my heart. I am so blessed that we have a special bond. She has inspired me throughout my life and continue to do so even whilst being on the other side of the world.
I am happily married to a husband I adore and we have two wonderful children whom bring so much joy to our lives. I love spending time with them and being part of the journey in life. I love filling my days with moments of making or creating. I enjoy thrifting and finding little gems and there is nothing more rewarding than finding some old tat and turning it into something beautiful. A year and a half ago I started crocheting and it's fair to say that I am completely hooked!! I just wish there was more time to put yarn around my hook.
This blog is a diary of my life and I hope to share some fun and wonderful moments with you all. I have been so inspired by creative spirits and their blogs over the years and I hope I can return the favour. Hannapat